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Flu or Flu-like illness in chronically ill or disabled children

Parents concerns about taking antibiotics

Antibiotics are used to treat infections caused by bacteria. Many childhood infections are caused by viruses and would have got better without antibiotics. But the picture is complicated as some infections caused by viruses can lead to an infection by bacteria. This is known as a secondary bacterial infection.

Taking antibiotics unnecessarily can cause bacteria to change so that they can no longer be killed by antibiotics which were once effective – they become “antibiotic resistant”. Resistant infections are more difficult to treat, making people more unwell for longer.

Deciding who will benefit from antibiotics is not always easy. Children who have a long term medical condition or disability may need antibiotics more frequently to help them recover from bacterial infections, such as chest infections and ear infections.
 

Nia, who had studied microbiology, understood the need to sometimes wait a few days before her son starts to take antibiotics.

Nia, who had studied microbiology, understood the need to sometimes wait a few days before her son starts to take antibiotics.

Age at interview: 27
Sex: Female
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Yes you know I’m as having sort of studied microbiology myself at university I’m aware of you know antibiotic resistance and the need to try and you know not overuse antibiotics, so as long as I don’t feel that Daniel is getting significantly worse quickly I’m happy to wait you know a day or two to make that decision to use antibiotics if it’s necessary.

What are your views about sort of any problems or any drawback on, on using antibiotics? Either for your son or then on a kind of wider level?

Obviously I’m aware of antibiotic resistance problems and antibiotic resistant bacteria, things like MRSA, C-difficile have developed resistance you know to the mainstream antibiotics.

I have thought a lot in the past about whether long term use of antibiotics might lead to some kind of problem in the future, you know digestive problems for example in the future. But then you think in the here and now if I say that we don’t use the antibiotics, is that going to lead to you know a more serious chest problem? Is that going to lead to becoming significantly more unwell? It is a difficult decision to make. I feel very much led by the GP. If my GP is saying I want to prescribe them then he must feel it’s necessary. I know GPs are encouraged strongly not to give antibiotics unless absolutely necessary so if he’s recommending it he must feel that it’s necessary.
Resistance vs ‘immunity’

The parents we spoke to were all aware that it isn’t a good idea to take antibiotics ‘too often’, saying that ‘obviously’ they preferred to avoid antibiotics. People had seen posters at their doctors, read articles in magazines and newspapers and heard from friends and family, as well as their doctors, that there was a danger from ‘overuse’.

However many thought that antibiotics should be avoided because the child might become ‘immune’ or ‘build up tolerance’ or ‘resistance’. As some of the parents knew, it is the bacteria, not the child that is in danger of becoming resistant; this is why reducing the use of antibiotics is so important. 

Parents’ other concerns about using antibiotics included:
  • Fears about what would happen when bacteria become resistant and we no longer have treatments 
  • A preference to fight infection naturally, with the body
  • Concerns that the body may get overloaded with the various medicines the child takes for their long term health problems
  • Antibiotics can cause digestive problems by destroying friendly microbes in the gut 
  • Worries that GPs (especially in the past) hand our antibiotics inappropriately, for example for viruses
  • The necessity of completing the course of antibiotics once started, even if the problem has resolved 
  • Antibiotics are precious and should be reserved for when really needed, as the last resort
  • Whether their child’s frequent use of antibiotics in their early years was storing up problems for their future health
 

Clare worries about moving into a post-antibiotic era if new drugs are not found.

Clare worries about moving into a post-antibiotic era if new drugs are not found.

Age at interview: 46
Sex: Female
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Is antibiotic resistance something that you think about, or?

Yeah. I do. I do. I heard the news the other day about in China where they've discovered something which doesn't seem to be responding at all to any kind of antibiotic. And I, yes - I had a moment where I thought that's bad news. And when they say we're moving into a post-antibiotic era, that did worry me, because antibiotics have sometimes been the only thing that have worked for Eliza, so. And given also that she's somebody who's going to be having major surgery regularly through her life, and those post-surgery infections and so on that she's been treated for so many times, you know, if there aren't antibiotics I don't quite know what the alternative is. There doesn't seem to be anything at the moment that's in the pipeline, so. Does concern me a lot, yeah.
 

Jack usually needs a stronger antibiotic to treat his infections. On one occasion when he was prescribed amoxicillin, his consultant said it was, “as useful as a chocolate teapot.”

Jack usually needs a stronger antibiotic to treat his infections. On one occasion when he was prescribed amoxicillin, his consultant said it was, “as useful as a chocolate teapot.”

Age at interview: 40
Sex: Female
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And, as I say, I’m not keen on them, if he does have a blood test and his CRP is less than 50 I’m not keen on them giving him antibiotics because I think he should be given to bite the bullet, if he’ snot showing any other clinical signs maybe other than sputum, you know, or whatever, then give him a chance to fight it off himself and build his own resistance up rather than just the first sign of anything is, we’ll give him antibiotics. And then a lot of the time they’re mis-prescribed anyway, so Jack has enterococcus water infection and she gave him amoxicillin and one of the consultants was like, “What is the point in that? As useful as a chocolate teapot”. So I’m a bit like, well, you know, if you’re going to give antibiotics it needs to be like a 21 day course to totally cover it. And I think a lot of the time they give you anti, they give you like a wide spectrum, so they might give you like amoxicillin or cefaclor for seven days or five days and it’s not going to do nothing with children like Jack who grow, who are known to grow, you know, quite resilient to bugs. 
Parents sometimes contrasted the apparently casual use of antibiotics when they were growing up with the current concerns about overuse. Knowing that, these days, doctors are reluctant to encourage use of antibiotics several parents said that if the doctor recommended use, they would certainly follow the advice. 

Parents we interviewed who wrongly thought that there was a danger of the child becoming immune if they used too many antibiotics. Others could not understand why GPs didn’t want to use them with their child. As one said, ‘I know for a fact that my boys haven’t been on them long enough to build a tolerance to the…. So I don’t see how. I could understand if you were in there every week saying ‘I want this, I want that’ ….’

It is the bacteria, not the child that is in danger of becoming resistant (immune) to the antibiotic. This matters because it shows that doctors need to explain clearly the reasons why they are trying to reduce prescribing.
 

Mirella’s GP does not always prescribe antibiotics straight away for her three year old son. But she trusts his judgement because he knows her son well.

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Mirella’s GP does not always prescribe antibiotics straight away for her three year old son. But she trusts his judgement because he knows her son well.

Age at interview: 36
Sex: Female
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Well sort of, you might yeah take your child to the GP and then they listen to their chest, or, or throat or whatever it is. And they would say, “Well I would think there is an infection there, but we you know would be happy to wait for a day to see whether it starts clearing without antibiotics.” And then, or then often the GP says, “Well are you happy with this?” And I would say, “Yes.” Because you know and I have been given a prescription, but say “Wait for a day, and if you can’t see any improvement then please do start the course of antibiotics.” And I guess, yeah it’s just you know if they say, if they say you have to have it, then it’s a clear infection of course I will start and then in sort of cases which are not so obvious then we’ll just go on the, the history that they’ve had before and obviously I’m lucky enough that I always pretty much see the same GP who knows my children from birth till now, and obviously he’s seen them very poorly and not so poorly. So even just walking into the doctors surgery he can say, “Oh he’s very poorly this time,” or he might say, “Well actually he looks a lot better than he used to be, when he was this poorly, so are you happy to wait for a day or two? And I’ll give you the prescription anyway and then if, if you feel that he’s getting worse then just start it.” So I think for me particularly is that I’ve got very continuous care with the same doctor, who’s seen them very well and very ill and in between. And that’s why I think I really trust his judgment as well. And go with whatever he recommends really.
 

Hyacinth says antibiotics are better managed these days than when she was young.

Hyacinth says antibiotics are better managed these days than when she was young.

Age at interview: 42
Sex: Female
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Does that concern you, becoming resistant to antibiotics?

Yes it does, especially because he’s tried so many.

Right.

And had so many in the hospital. He’s had most of ‘em, I mean and I was looking up the antibiotics to see what, which ones were broad spectrum.

Yeah.

He also used to suffer with a lot of urinary tract infections as well, I forgot to say so he used to be on a lot of antibiotics for those as well.

Yeah.

Yeah and I’ve just kind of, that’s why I’ve tried to just make sure he doesn’t really use a lot because I don’t want him to run out of options when he’s older and like really unwell, and then he actually can’t use them. I think maybe even if you don’t use them for a good amount of years you might be able to tolerate them again, you know like years later. I just think it’s the constant use, the constant use that kind of makes you resistant. Yeah if that makes sense.

And does the antibiotic resistance concern you on a kind of community level or population level or is it more for him and thinking about how he’s going to be when he’s older?

Well overall I think actually for everybody because I used to take a lot of antibiotics when I was younger myself.

Right.

So for me to actually not really be into taking antibiotics, I mean I used to take, I used to suffer from migraines so I used to be on quite severe migraine medication and antibiotics and all kinds of stuff actually. Even sleeping pills at one stage when I was 17 and I used to have insomnia. Yeah and I just think, I just yeah I just kind of think the more medication you have the more, not just resistance, the more the different illnesses and diseases can kind of become much worse and then kind of not be controlled by what’s already there, yeah. 
Doctors sometimes give a prescription but recommend waiting a few days before taking it, in the hope that the infection will clear up on its own. Ruth was given a prescription for antibiotics to take home and use if her daughter’s symptoms didn’t improve. Adam experienced the same at his GP and he agreed with this approach to managing antibiotic use for his son.
 

Once or twice Clare has been given a prescription by her GP for her daughter to use if her symptoms did not improve.

Once or twice Clare has been given a prescription by her GP for her daughter to use if her symptoms did not improve.

Age at interview: 44
Sex: Female
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Has she ever had complications due to a flu-like illness?

We said she had a secondary chest infection that, that first time and I think that’s maybe how the diagnosis. It was around the sort of, were all around about that time, you know, when they said that they thought because obviously she was given some antibiotics then but she had been quite unwell with the flu initially and then obviously it wasn’t shifting. I did take her to the GP and that’s when he said, “Oh she had a chest infection which was probably because she’d had the flu. 

So the decision to give antibiotics again was made by the doctor?

[Uh huh] Yeah.

Did the doctor discuss it with you or?

Yeah they were very good, GP practice yeah and they don’t like to give out antibiotics to be fair. They are very good at looking at a child properly and going through the options and explaining their reasons, you know, for not prescribing. So I do have a lot of trust in them if they are giving them out then it’s warranted yeah.

So when you take your daughter to the doctors because she’s with flu they check her?

Yeah they get, they do check her peak flow and, you know, check everything else as well. You know, listen to her chest and yeah.

Have there been occasions when you have been given a prescription and just to see?

It depends on, yes they have done that once or twice yeah.

And have you used that prescription?

I haven’t actually but I think it is quite a good idea actually because it sort of puts the owness onto the parents doesn’t it? And as long as they explain the rational for it and when to give it, it could work quite well actually, yeah.
 

Sometimes Adam’s GP says to wait a few days before he prescribes antibiotics for his son.

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Sometimes Adam’s GP says to wait a few days before he prescribes antibiotics for his son.

Age at interview: 40
Sex: Male
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Is he still having flu sometimes? The same severity or they’re a bit milder, lighter?

A bit mild, in a way. You know, if I see, you know, that the breathing side he’s not that bad as it was before. But, the other side, you know, he’s coughing sometimes he’s getting worse and it change to infection to his chest, that’s why he got antibiotics sometimes. It’s not that often. But he’s less, much less than it was before.

So the use of antibiotics has been sort of kind of been reduced as he grows older or…?

When the doctor think, you know, if they think you know, it takes time, you know, to because when you got the flu, sometimes it takes time. They don’t give antibiotics straight away. They say, wait a couple of days, check it, listen to his chest. So, they decide, you know, whether they can give antibiotics or not. Sometimes he goes wheezy with his chest and the cough is getting worse, so doctor decide that when he or she you know, think you know, it’s infection they have to give antibiotics.

This is the GP?

The GP, yeah.

Did you get an appointment easily, because sometimes people have to wait for a GP appointment?

To be honest, you know, he’s different from day to day, depending on his situation when we explained it to the doctors. So, sometimes we got an appointment, you know, same day. If they haven’t got any appointments in the morning we have to wait until evening time, you know, five six and sometimes we have wait until next morning. 

Do you have a view when antibiotics should be prescribed to your son? And on what situation should antibiotics be prescribed to your son?

When we took him to the GP and the doctor checked if he need antibiotics or not. The doctor tells us, you know, what he thinks, if he thinks his virus, he tells us it is a virus or, he tell us what to do. If its infection and he thinks he should have antibiotics he tells us what he thinks. He says, yeah, I think it’s an infection and he needs antibiotics. Sometimes he will ask, you know, it seems that he got virus and we’ve got to give him antibiotics. Always we have to discuss the situation with the doctors and what they suggest. 

Have there been occasions where you haven’t agreed with the doctor? And he says, he might, he does need or no he doesn’t need.

It’s not that often, but you know, it could be sometimes that we thought, you know, it’s getting you know, and he was very ill and we thought, you know, it’s infection or sometimes they say, no, this is a virus. We have to see. It’s getting worse and bring it back and then he starts with his infection, sometimes but not that often.
Although parents had concerns about their children taking too many antibiotics they also accepted that sometimes they needed antibiotics to prevent them becoming seriously ill.
 

Oscar has complex medical needs and although his mum is concerned about using antibiotics too much (and avoids them for her other child and herself), she accepts that sometimes there is no alternative for Oscar.

Oscar has complex medical needs and although his mum is concerned about using antibiotics too much (and avoids them for her other child and herself), she accepts that sometimes there is no alternative for Oscar.

Age at interview: 41
Sex: Female
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I mean obviously you don’t want to give your child antibiotics all of the time and you know we understand the affect it has on the wider community as well. And you know people are getting used to antibiotics but in Oscar’s case it’s just there’s no alternative because everything is just a bit worse for him. So in some children if they had an ear infection you can just go. Ok they can bear it for a couple of days and it will work itself out. With Oscar it won’t and he’ll be in a huge amount of pain because it’s just always a bit worse for him. And so, you know, we have to use antibiotics. And also you don’t want things to escalate. What is, you know, at the start a small chest infection if you leave it becomes pneumonia. You know, and you have to. So for us we have to use antibiotics when it’s needed. With my other child for example if he got ill I would try harder to not give him antibiotics quite so quickly. And luckily he’s, he’s a very well person and very rarely needs these things. And also for myself I would try and hold off antibiotics a bit more but with Oscar it’s just, it has to be that way and, and we want him to be safe and antibiotics have helped him be safe.

Have you discussed with any health professionals antibiotic resistance or is it something you are worried about or?

It, yeah we have with the GPs but they always say in Oscar’s case just what I was saying. He just, he needs to have it when he needs to have it and…

And that’s it.

That’s it [ha ha] basically.
 

Although Harriet worries about antibiotic resistance, antibiotics are vital in keeping Alfie well enough to complete his chemotherapy treatment.

Although Harriet worries about antibiotic resistance, antibiotics are vital in keeping Alfie well enough to complete his chemotherapy treatment.

Age at interview: 31
Sex: Female
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Yes I think that, I think that particularly perhaps when I was a child and my generation more I think antibiotics were perhaps given more freely. I think I often remember being on antibiotics all the time when I was little and I was so frail so I wonder if, if sort of standard practice for giving out antibiotics has probably changed over the years since I was a child anyway but I, we do worry about Alfie’s long term health and whether antibiotic resistance is going to affect him later in life. But it’s the worry that’s outweighed by keeping him alive, you know, he’s getting him through this treatment safely and so we don’t have a choice.
Parents thought carefully before asking their GP for antibiotics. In some cases, they waited to be sure that the infection was not getting better before giving antibiotics to their child. Sharon tries to limit the need for antibiotics by increasing Henry’s asthma inhaler as soon as a cold begins and so hopefully preventing the infection from progressing.
 

Matias’s parents understand that antibiotics are a last resort and that there is no point in taking them for a virus; they watch and wait before seeing the GP for treatment.

Matias’s parents understand that antibiotics are a last resort and that there is no point in taking them for a virus; they watch and wait before seeing the GP for treatment.

Age at interview: 42
Sex: Male
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What about in terms of antibiotics and being prescribed antibiotics, obviously he’s not on them a lot, have you got any sort of concerns or you know thoughts about antibiotics resistance?

Oh very much so yes, absolutely, absolutely this is definitely, I mean we I often have the discussions, you know with, with his mum and about what to do when he gets, you know, and as I say it still could be viral and I’m thinking it still could be viral, it still could be viral it’s, you know, it’s that point where you go okay you know and the antibiotics is a last resort thing for us, we don’t, we recognise the fact that there is the issue of resistance to it and, and so therefore it’s not as if it’s our, our method of choice of treating him. Because for a start to doesn’t work, if its viral it's not going to work, it just it does more harm than good so, you know, it is only a case of look it’s been whatever how many, you know, 15 days or whatever and it hasn’t gone anywhere and he’s still coughing up horrible green stuff it’s, you know it can. You know, should we talk to the GP about giving him antibiotics and she usually yes, you know, oh yeah actually you know. But it's not, but it’s definitely something we think about absolutely definitely something we think about, you know, the majority of colds are viral, it’s not and it’s just a secondary infection so.
 

Doctors prescribed antibiotics to her son ‘just in case.’ She prefers to only give them to him when he has a chest infection or urinary tract infection.

Doctors prescribed antibiotics to her son ‘just in case.’ She prefers to only give them to him when he has a chest infection or urinary tract infection.

Age at interview: 42
Sex: Female
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How much have they told you about why they’re giving the antibiotics?

Not a lot really. I mean when he was kind of first discharged from the hospital the first probably three or four years, anytime he was ill he was, they was trying to give him antibiotics.

Oh really.

Like a, “Just in case.” But I did say because he’d been on so many I think it really kind of lowers the immune system, especially if you’re doing a “Just in case,” kind of thing. So I am told really a lot about it because I won’t just give him antibiotics or medication just kind of, I won’t just give it to him like that. But if they say his chest is not clear or, or something else and it seems like it’s going to turn into another infection yeah then I will give the antibiotics.
Taking antibiotics to prevent infections

Some children took a low dose of antibiotics every day to prevent infections. It is understandable, given the concerns expressed above, that parents of these children were initially worried about their child being on antibiotics long term. After being reassured by her son’s consultant Michelle felt more confident about Jack using them for prevention; she thought that the antibiotics had “kept him nice and steady.”
 

Jack has complex medical needs and takes a low dose of antibiotics every day. His consultant reassured Michele that they were necessary.

Jack has complex medical needs and takes a low dose of antibiotics every day. His consultant reassured Michele that they were necessary.

Age at interview: 40
Sex: Female
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Yeah, because I think when it was explained to us that they were putting him on permanent antibiotics I was like, “Well, surely all the, what you hear in the news is that they don’t work if you take them and things” and they said, “No, because got chronic chest issues”. They sort of just help, keep, so if he’s having a bad day with secretions it’ll hopefully stop the bugs growing. And I think, you know, it has, it helped a lot. 

So I think I’m quite sensible really with antibiotics, I don’t think I’m one to go, “Oh, let’s start antibiotics straight away”.

OK.

I try and look at the bigger picture and see has he got a temperature? Does he look like he’s in pain? Because it’s a lot of guesswork as well because sometimes with Jack if he’s a little bit constipated he can go really flat and you think, “Ooh”, and then you’ve got to like think back, “Well, has he been to the toilet” and deal with that. So I try and deal with other things and then think, “No, he needs to switch over”. So I, but I do think the prophylactics have helped a lot at keeping him nice and steady.
See ‘Side effects of antibiotics’ and ‘Parent’s views on the benefits of antibiotics’.
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